This last week I have been trying to carry on at a normal pace, almost as if I hadn’t had implant surgery 2 months ago. So I attended a governance half day conference, started up the year 6 club I run, attended a meeting at each of the schools where I sit on committees, saw Kenneth Branagh’s A Winters Tale live at our cinema ( long but a fantastic cast – particularly the young stars, Tom Bateman and Jessie Buckley) and attended St Thomas’ outpatients. Needless to say, I completely overdid it and then made a birthday cake for my nephew, which we delivered to Witney at the weekend. I had forgotten what germ pools children’s birthday parties can be, but after time spent in the soft play barn my brother, Duncan and I have all gone down with the lergy. Only my sister in law has escaped….so far!
My appointment was in the joint Pain and Urology clinic with a view to positioning an additional electrode lead to attempt to give my bladder back some sensation. We have decided though to leave well alone at the moment, as there are no guarantees that a further procedure would not cause lead migration and electrode movement for the existing implant. Equally there is no guarantee that the procedure would even help my waterworks! No brainer…..so I must now try to retrain my brain/bladder, otherwise known as potty training. Of course this should become easier as I continue to reduce the drugs as another side effect of strong opioids is retention. http://www.medscape.com/viewarticle/763040_4
Where does gain morph back into pain? I saw a different CNS on this occasion and was told that I’m doing “brilliantly”, but that I’m probably expecting too much of myself too soon. This was the first time that we were told that it takes a good 6 months for the body to adjust and for the person to become adept at using the scs. All my concerns about increasing levels, struggling to cover my foot pain in the cold and leaving the stimulator on for too long were swept aside. I left feeling a great deal happier.
I met a young mum at the weekend – also at the birthday party – who had also received a scs recently. Funny really, after my appointment for a trial in bladder stimulation, as she has a sacral stimulator for function rather than pain control. She is in the forces and told us how she has served in Afghanistan and Iraq, yet it was the birth of her first child that has left her body with irreparable internal damage. The stimulator has been implanted to help her regain some function of her bladder and bowels – it seems almost beyond belief that in a developed country a young woman can still experience this level of damage and dysfunction as a result of childbirth. I am full of admiration as not only has she had another child, but she remains in the forces whilst juggling life as a wife & mum of 2 small children, living with this unseen disability.
As for me, well a hacking cough, headache and fever do not combine well with back pain. In fact the scs has almost made my back and leg pain even harder to cope with at times today. I wonder why this should be? I think I’ll decamp to the student’s bedroom tonight (keep encouraging him to take more of his things to his uni flat, but still he comes back. Must change the locks…….kidding, maybe) as we haven’t quite got our coughing in unison yet and will toss & turn all night for the wrong reason!